Daunting diagnosis

Man makes quick recovery from Miller-Fisher syndrome

Man makes quick recovery from Miller-Fisher syndrome

March 02, 2009|By ANDREW GAY / Special to The Herald-Mail

Pat Henson of Waynesboro, Pa., spends his days working for the main post office in Frederick, Md. But his passion is music. Henson, 39, plays drums, teaches drum students and performs with local rock band TwoFace.

But a year ago, Henson thought he wouldn't be able to do any of that again. He was diagnosed with Miller-Fisher syndrome.

Miller-Fisher involves a temporary, partial paralysis of the body, according to the National Institute of Neurological Disorders and Strokes. Symptoms begin in the upper body and gradually spread downward.

In Henson's case, his ability to see, speak and move were all hindered by the disease. A doctor can only diagnose the condition through medical signs and additional symptoms described by the patient.

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The cause is not known, and the condition is not life-threatening. But symptoms of double-vision, nausea and muscle weakness make life difficult.

The symptoms

Henson's ordeal with Miller-Fisher began during a trip to Japan to visit friends in 2008. When he arrived, he was hit with what he described as a stomach virus.

"On Jan. 22, I woke up and my hands, feet and my mouth, or gums I should say, were numb," said Henson of the first moment he noticed something was wrong.

Over the next few days, Henson said he noticed changes in his body including his ability to speak clearly and a radiant tingling sensation in his back.

"Basically what was happening were the nerves working my palate stopped working, causing changes," he said, "I had no appetite or thirst."

Over the next few days the symptoms worsened, causing Henson to seek treatment in a hospital in Japan.

"Being a foreigner in Japan and not a resident makes getting health care quite expensive," he said.

Even though he had past experience speaking Japanese and assistance from some friends in the country, the cultural and language barrier made getting care more difficult for Henson. He made two trips for care while in Japan; his doctor recommended that he go home to seek treatment. A quick call to the airline and, six hours later, Henson was on a plane back to Washington, D.C. He still had no clue about what was making him ill.

"I was scared," Henson said. "Scared because I didn't know what was wrong."

On his travel home, Henson started to worsen, losing clear vision and struggling to walk. Upon landing in D.C., he needed the assistance of a wheelchair.

"I knew I wasn't going to be able to walk," he said.

Family and friends, including his girlfriend, Elizabeth Burchfield, rushed him to the hospital. Henson initially wanted to go to Johns Hopkins in Baltimore, but a mix-up landed him at George Washington University Hospital.

The diagnosis

Once at George Washington, Henson said doctors began to perform a series of tests. Initially, he said, doctors believed he had ingested a neurotoxin from fish he might have eaten in Japan.

"That was scary," Henson said, noting that doctors told him there was no cure for this scenario and he wouldn't recover.

Still left with no answers, doctors moved Henson into the Intensive Care Unit as a precaution. As testing continued, Henson's condition worsened and he was fitted for a feeding tube.

"They waited as long as they could, but it had been 10 days since I had eaten," Henson said. "I sucked water from a tiny piece of sponge."

After three or four days in the ICU, doctors concluded that Henson had Miller-Fisher syndrome.

"(The doctor) said we're about 80 percent sure we know what you have," Henson said.

The mystery finally over, the doctors at George Washington gave Henson a choice to either let the syndrome run its course or to undergo an expensive treatment with intravenous immunoglobulin - antibodies which play a role in a body's immune system - that might speed up the body's healing.

Henson opted for the treatment.

The treatment

Over the next weeks, doctors performed many tests on Henson and observed his condition.

"It was groups of doctors in and out," Henson said. "I was the hot item at George Washington University."

Through everything, Henson wasn't alone. He had the support of his girlfriend for the duration.

"She stayed with me the whole time, thank God," said Henson.

After his second treatment with immunoglobulin, doctors and Henson began to see a change in his condition. His numbness was getting less intense and he began to regain his speech and sight. Eventually, his appetite returned.

Finally, after spending a little over two months in the hospital, Henson was released.

Henson said doctors told him that the onset of his Miller-Fisher syndrome began when his antibodies tried to attack his stomach virus in Japan, eventually attacking his body instead.

The future

Henson discovered that a full recovery was going to take a lot of work.

"When I sat down behind my drums again, it took a while," he said.

he went through therapy and also faced the small possibility of a relapse or residual effects of the disease. This included a bout of Bell's palsy, a temporary facial paralysis, which Henson experienced during the weeks after his release. According to NINDS, relapses occur in less than 3 percent of patients.

Henson said he kept all of his files, paperwork and evidence of his battle with Miller-Fisher, going so far as to record and document his experience on video so others can know what he went through.

"Most people don't recover in under a year. I fully recovered in six months," he said.

He is back behind the drum set, most recently playing a Saturday night show at Duffy's on Potomac in Hagerstown.

Henson said he's happy to be doing the thing he loves.

"I feel fortunate to still be able to play," he said. "I've been playing music since I was young and hopefully will until I die."